Patient Portals to Support Palliative and End-of-Life Care: Scoping Review

Abstract

Background Although patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers. Objective This study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature. Methods We performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19). Results In total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults. Conclusions PCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.

Patient-reported outcomes in integrated health and social care: A scoping review

“… 18 – 22 Patient-reported outcomes were also viewed positively as means of facilitating person-centred care 21 , 23 by improving communication between care recipients and their care team, increasing user involvement in decision-making and helping prepare for medical appointments. 22 , 24 , 25 Patient-reported outcomes were understood to have potential to support self-monitoring (especially for frail older people and people with multiple, long-term conditions) thereby enabling people to maintain independence in their homes and communities as long as possible. 25 , 26 Patient-reported outcome measures were proposed to have positive impacts in terms of their ability to generate alerts to changes of care recipients’ health status 26 , 27 and, in the case of community aged care assessments in Australia, to raise awareness of recipients’ psychosocial needs.…”

“… 25 , 26 Patient-reported outcome measures were proposed to have positive impacts in terms of their ability to generate alerts to changes of care recipients’ health status 26 , 27 and, in the case of community aged care assessments in Australia, to raise awareness of recipients’ psychosocial needs. 21 , 24 Monitoring health and wellbeing using PROs was viewed as helpful in supporting ageing populations to live at home. 26 Potential negative impacts included burden associated with PRO measure completion and potential for PRO measures to highlight negative emotions or distressing circumstances to care recipients.. 17 , 21 Use of closed-ended questions to measure PROs was considered to privilege measurement over what matters most for care recipients.…”

“…Perceived barriers included limited ability of care staff to act on alerts triggered by PRO scores and a need for training to enable staff to generate timely, appropriate referrals from PRO data. 21 , 24 , 26 , 27 Data capture and management were also identified as implementation barriers. A pilot study of a nurse-led palliative care intervention in rural Canada identified challenges associated with missing data and longitudinal collection of PROs.…”

“…PRO measures of social engagement were found to support caseload management and aid policy and managerial decision-making in large-scale Australian aged care organisations. 24 , 33 …”

The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19

“…Expansion of telehealth for LTC facility residents receiving hospice services could have other benefits as well. For example, access to patient portals, which allow authorized users to securely access information regarding patients/residents’ healthcare and status, could significantly decrease unmet information needs among family caregivers and hospice providers, who would otherwise be waiting for returned phone calls and emails; however, to date, patient portal adoption has been limited in both hospice 23 and LTC. 24 …”